All tagged Cincinnati Children's Medical Trips

Therapy Support Found for Pediatric Use of an Eletrolarynx

Nathaniel and I left his Cincinnati Children’s Hospital check up last May with an interesting recommendation from his ENT: look beyond the pediatric community for information and support. I had arrived with questions about Nathaniel’s options for voicing. They shared of another patient with a laryngotracheal separation who learned to use esphageal speech. They also expressed a great deal of hope that given the right support, Nathaniel had a good chance of voicing.

May Cincinnati Trip: Fixing the Broken Things

Today was the sixteenth time in less than three years that I handed Nathaniel to an anesthesiologist for a surgery or medical procedure. That does not count illnesses and lab work. Despite the outward appearance of resiliency and well-being, the chronic need for medical intervention is taking a toll on Nathaniel's body. We are in Ohio for two days of appointments at Cincinnati Children's. Nathaniel was seen by four surgeons in the operating room this afternoon. As a side note, I really like it when doctors play well together and coordinate care; if handled differently, what was done today could have required four separate visits and four more handing overs to be sedated. Thank you Cincinnati Children's!

Laryngotracheal Separation Surgery: Day 6-13

Nathaniel was discharged from Cincinnati Children's on Saturday, February 13. During our visit to Cincinnati last September for the tonsillectomy, we became friends with the crews at the Blue Ash Fire Department. They offered to provide a few dinners for us this trip. A delicious steak dinner, and teddy bear for Nathaniel, was delivered to our hotel Saturday night to celebrate both Valentine's Day and Nathaniel's successful surgery.

Laryngotracheal Separation Surgery - Day 5

Nathaniel has improved by leaps and bounds since the third day post surgery. He's playing with trucks, working on language, and roaming the halls pushing and pulling a wagon. Opps! It is not so quiet around here anymore. We're even back to taking hospital selfies. (Boy, do I have a lot of hospital selfies with this kid.) Tomorrow morning early (6:30) the doctors will change his tracheostomy tube for the first time. If you happen to be a Saturday morning early riser - pray for us. Rich and I both need to be present to learn new care. We will see the incision and new stoma for the first time. We have been through many surgeries as parents; it never gets easy to see a fresh surgical wound on a small child. Afterwards Rich and I will each demonstrate our ability to care for the stoma and change his trach tube. If we do this tomorrow, Nathaniel will be discharge. The discharge is two days earlier than doctors told us to anticipate - a sign of how quickly he has recovered in the last couple days.

Laryngotracheal Separation Surgery - Day 3

There have been a few post surgery issues to cope with that have made recovery not fun. No complications, just not fun. Nathaniel's IV needed restarted; I have decided though I strong description, 'hate' is how I feel about the word occluded when it flashes from an IV machine. Nathaniel has also had some difficulty with voiding and has needed multiple catheterizations. Hopefully these minor issues will continue to improve. 

We learned last week that our friend, Maverick, was traveling to Cincinnati and having surgery this week too. Maverick and Nathaniel were featured in a St. Louis Post Dispatch last spring when we met doing trach training for first responders.  Maverick's room is four away from Nathaniel's room, and he came by this morning to share some toys. It was good to see Nathaniel smile during the visit.